Zaiya’s full name is Zaiya Ruth Anne. Zaiya means the lord is gracious, Ruth means friend, and Anne means Grace. She is truly a friend to everyone she meets, she brings joy, even in the midst of her struggles. There was one time she was doing an overnight stay at the hospital. Child Life was putting on an event for the kids, she walked down the hall to every door and said “Come on friends! It’s a party! Come on!” so that everyone could enjoy the party because she didn’t want anyone to miss out. That is my child, a friend, who loves to laugh, loves to have fun, and loves to explore. 

Zaiya was diagnosed with ALL on April 13th, 2023. Her PCP thought she just had low Iron. As her mother I pushed for her to go to CHOP because her behavior changed dramatically. I have a very friendly, high-energy, bubbly, and content child. She became tired, stationary, cried easily, and always wanted to be held. I knew something was not right. We were told to go to a LabCorp for blood work, I refused and pushed to go to CHOP. We are glad we did. Her hemoglobin was a 2 out of 10 when we arrived. She was fighting for her life for two months while we advocated for her. She always asked to be held and we did it, even moved her into our bed. I believe she was able to keep fighting because she was getting the love she needed to hold on.

She had a port surgically implanted, and she has a mixture of Dexamethasone, Vincristine, Amlodaphine, Leucovorin, Methotrexate, and various other medications. She’s in physical therapy. Every three weeks she stays in the hospital for three days every week she’s in the clinic up to twice. 

Financially, it has been a burden because we went down to one income so that I can be the primary caregiver. We also have another child who is nine months old. I have to take the two of them to every doctor’s appointment and every hospital stay by myself. Being able to prepare healthy meals for my family has become a challenge. Between running to appointments and managing at-home care we’re just trying to find our new normal and what we can do. We’re constantly exhausted but I’m still grateful that we have a fighting chance. It’s hard work but it’s worth it.

She was diagnosed soon after her brother was born and right before her third birthday. COVID hit our family hard, like the rest of the world, we had back-to-back challenges in 2023 was going to be the year that we could finally take a breath as a family, leave the house, and spend time with people we love. It all changed. it seems so trivial now but trips that we had waited five years to book. We finally booked and then had to cancel our trips to see family who we hadn’t seen in years. This threw us into another crisis just when we were taking a breath.

But, God is good and we were given a chance to fight for our child’s life. We weren’t told that she was terminal and had a fighting chance. That’s all we needed. Fighting is hard, and it takes a toll on us as a family, we don’t ever schedule anything in advance because everything can change from day to day. It’s difficult to do anything outside of medical visits. We are working hard for some type of normalcy, but we’re taking it hour by hour, day by day. we’re grateful for the moment we have figured as a family that things are good. and we take our heels in and fight when things are bad and stick together. We have learned to hold tightly to what we have to hope for the future but live in the present.

She’s a fighter and she’s an encourager. She’s loved by so many because she loves freely. I’m blessed to have her in my life.

Hope session by Jenni Fritz Photography | Facebook | Instagram